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Saturday, June 9, 2012

“Health Data Palooza and the Art of the New Aesthetic?”

This was the first year I was able to attend HDI (Health
Data Innovation)/Health Data Palooza in person. HDI is a joint effort of the IOM, CTO Todd Park and
HHS. It is a great coming together
of open data sets, innovative thinkers, investors and hacktivists.

This year I had a booth! If you went to the exhibition floor you would pass row upon
row of mobile health apps and health data interfaces. If you walked by those,
to the end of the row, you would find me in booth #31.

The entry was a video, as
the painting process was captured in real time by filmmakers Tessa Moran and
Ben Crosbie on a busy street in Washington DC. My research partner in the endeavor was the amazing Ted
Eytan, MD. No, I did not get to
attend in person in June of 2010, but was well represented on stage that day by
a painting on Roni Zeiger’s back.

In June of 2011, I once again missed the opportunity to
attend HDI. The window of
time to reserve a ticket was very small.
By the time I was aware of the event, the event was full. HDI:2 was a couple of days after the
first gathering of The Walking Gallery in Washington DC. There were several members of The
Walking Gallery who attended.
Walking art would represent me.

This year I waited with baited breath for registration to
open and reserved my ticket on day one.
I communicated heavily with Danielle Turpinseed from IOM and Aman
Bahndari from the office of the CTO about my desire to paint onsite as part of
The Walking Gallery. They said I
would be allowed to paint in the large plenary session room in the mornings and
then in the exhibition hall in the afternoons.

This is the painting I created: “Health Data Palooza.”

I painted the sky and landscape of this piece in the back of
the room. It was very hard to paint,
as the lights were so low. I could
barely tell the difference between the colors of my palette; often I would use
my smart phone as a flashlight to distinguish color and tone.

In this darkness I painted the binary landscape that
supports us all and I painted a data portal that is the logo of HDI. After three hours of trying to see with
little light I had a pounding headache.
I took down my easel and moved to the exhibition floor to paint the
details of this piece.

In the center of this painting, Todd Park stands with an
energetic confidence as he shows the viewer a piece of paper: “I did not get
the MEMO that this was impossible.”
In his other hand he hold the magic hat of the oncoming tides of open
data.

To his right, Alisa Hughley, from enBloom Media, writes notes about his speech upon her Ipad while wearing her freshly painted gallery
jacket. While further back in the background, Bryne Potter from Private Practice shows a patient facing EHR designed for use by a midwife and her clients.

Next, I painted about The Community Health Dashboard being
used by the NYC Dept. of Health and Mental Hygiene. The speaker mentioned the positive results they had seen in
lowering Cholesterol by using local Churches as a check in site for data
collection.

Then Jon Bon Jovi introduced Project Reach App challenge. He told the assembled why he was
inspired to do this work. He was
part of the closing shift at his Soul Kitchen, a place where people pay what
they can to eat, a place where the stigma of charity is replaced by the pride
of a job well done. That night
they had an amazing dishwasher, who kept washing as the kitchen closed around
him. Jon suddenly realized that
very likely this man had no place to go.

Jon launched Project Reach, a contest to encourage
developers to create and app that would help the less fortunate find out in
real-time which clinic could help them and which shelters had beds
available. Jon is working
with HHS, HUD and the VA to make his dream a reality.

We also heard about the iBlueButton from Humetrix. So blue button become s the center of
HDI’s logo. Here download and
transmit combine as patients fly in and out of the fluid data of care.

I did slip out of my booth for a few moments Tuesday June 5 to see the breakout session "Consumer Engagement Using Health Data." The part I was able to see was facilitated by Lygeia Ricciardi from ONC and Judy Murphy I came to see Karen Herzog, Tiffany Peterson and Alan Greene speak as patients and caregivers on the panel. They were all great. Though I missed I hear they even had an exercise break mid-session. Go patients!

On day two, I had learned my lesson and set up my easel by
the natural light streaming in from the corridor. I heard the presentation about the Cancer Survival Query
System by the National Cancer Institute.
It sounded like an amazing app that would allow doctors to have a
realistic and supported conversation about cancer care options no matter the
current stage of disease. I was
saddened to hear this app would not be able to be viewed by patients. So I stand within the painting blindfold
on hand reaching out to grasp an app that’s out of reach.

During my time in the exhibit hall, I listened to all the
stories crashing around me. Chiara
Bell was there with a new app for Careticker called KnockedUP. In the painting she strides up the data
hill.

Jeff Donnell, President of No More Clipboards, stares
defiantly at the viewer. He dares
us all to give up the vestiges of a paper medical records system and dive into
the world of digital.

To the left of Jeff, Pat Remington, MD, Associate Dean for
Public Health University of Wisconsin holds aloft a sign reminding us to focus
the power of data on the world of public health.

All the while I painted this, every few minutes someone
would stop to ask me about all the paintings walking around. Many of these data folks seemed very
confused by art at a health data conference.

I wonder if they have heard about
the new aesthetic. Can you truly
understand data without artifact?
Did people in attendance really think the term “Health Data Palooza” was
only a cute affection? Bill your event as an endless data party and you should
expect rock stars on the stage and poets in the audience. As I remarked to my friend e-Patient
Dave, "Folks can't
go around shouting 'Data Liberación!' and not expect a painter to show up
:)"

The Walking Gallery is a living manifestation mobile
health app. It has viral spread
and unlike many apps, continued use is quite common after initial down load. We are rapidly reaching scale supported
by social media and novel economic structures.

After seeing Gallery jackets everywhere she looked at in
the Health Data exhibition hall, one woman asked me in a wary tone, “Where does
all the money go?”

My flip reply was, “What money?
There is no charge to join The Walking Gallery. This is a patient advocacy
movement. You already paid. You pay by living your story and
sharing your joy or pain. Some
folks donate to help cover shipping and supplies, but there is no charge to
join the Gallery.”

We are more of an up-start than a start –up.

If Todd were to ask me what would take Health Data
Palooza to next level, I would say simply, every app on stage could use a
puppeteer explaining code or a poet performing a spoken word data set. When I look at apps I would like to see
art imbedded from the beginning and not as an afterthought. I see a new aesthetic finding its way into health data.

And of course we need a lot of patients included, in
design, on the stage and in the audience.

4 comments:

It is good that more and more of us our showing up. There was quite a crowd of patients in the audience. Both Tiffany Peterson and Karen Herzog presented on a panel in the afternoon session of the first day. I only saw the last part of that presentation so the only reference to it within the painting is all the flying patients.

The Walking Gallery Mini Doc

About Me

Regina Holliday is a resident of Grantsville, Maryland. She serves on the board of the local non-profit The Highland Thrift Shop. She is a member of the Grantsville Rotary Club. She is also Asst. Cubmaster of Pack 460 Cub Scouts.

In addition, Regina serves as a parent advisor to the Garrett County School Board Health Advisory Committee. She is also a member of the Garrett County Chamber of Commerce and The Garrett County Arts Council.

Ms. Holliday is an activist, artist, speaker and author. You might see her at a health conference painting the content she hears from the patient view. She is part the movement known as participatory medicine. She and others in this movement believe that the patient is a partner with their provider and both should work together as a team.

Regina is a mother and a widow; she speaks about the benefits of health information technology and timely data access for patients due to her family loss. In 2009, she painted a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her late husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. Her paintings became part of the national debate on health care reform and helped guide public policy.

She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits. Paint and patients, pills and policy all come together within The Walking Gallery of Healthcare. This "walking wall" of 330+ individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts. They are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. They are providing a patient voice, and by doing so, are changing the conversation.

She published a book with the Health Informatics Society of Australia (HISA) entitled: "The Walking Wall: 73 Cents to the Walking Gallery."